Trip to the dentist...

Took my little boy to the store today to buy silly bands. It's a crazy fad, but he loves them. He is my shy one and, actually, he interacts quite a bit with the other kids in trading them. He was extra good at the dentist today, so that was his treat. He sat in the dentist chair with these huge orange sunglasses on, his flip flopped little feet wriggling back and forth. He opened his mouth wide "like a lion" and didn't complain. It is in these rare moments that I can get a small glimpse of the independence and confidence that I pray will come to him. He is only seven but I need to know that he will be OK. I need to be able exhale. Just a little...

Small gifts

Four years ago, I sat at my goddaughters first communion. My hair was ultra short just barely ready for sharing with the world after chemo. She looked so beautiful and innocent and I just lost it. There are very few times in my life when I can remember not being able to control my emotions, but this was one of them. I felt not just tears, but overwhelming sobs beginning. I knew I had to get out of that pew asap. I finally got outside and got some air and let it all out. Soon my husband came to check on me. I didn't need to say a word. He knew everything in my mind. That i would never see the day my niece stood there again in that church in a white dress for her wedding. Even more upsetting that I would never see our 4 year old daughter make her communion. Well, on my Birthday 4/25, my beautiful angelic daughter made her first communion. This time there were no tears just overwhelming joy that I was there to celebrate and be the proud parent and help her do her hair in the morning. My whole family was there...it was a good day....even living under this cloud there can be good days....

Don't get too comfortable....

Cancer always has it's own agenda. Always. Just when you get a little confidence to relax a little, make plans and think just for a second that you can live with this thing. Wham! Hit with the big cancer stick again and this time almost knocked off the ledge I've been standing on. I thought I was doing fine in my clinical trial at Dana Farber. I mean, I was supposed to be getting a super duper new state of the art and uber expensive drug along with the regular treatment. How could my stupid cancer outsmart all that? Well, it did big time. Sat in Dr. P's office on 4/6/09 waiting for results of my latest scans expecting to pass with flying colors. There's no mistaking that slow walk into the room and the sad expression on your docs face. She didn't need to say anything. Once again, my world was shattered. Cancer spreading everywhere and my kidneys being squeezed to boot just to add some more drama. So there I found my self alone trying to summon the courage to call David and my family. Fast forward an hour later sitting in the chemo chair again. How did this happen?? How did I get here? Why am I here?
New treatment includes another super duper new expensive drug called Avastin with taxol. Everyone is of course hopeful it will do the trick. But...aren't they always when you start something new. And did I mention, I already did taxol almost 5 years ago when I was first diagnosed. Five years later and I'm getting the SAME drug?? Thanks war on cancer. It's going great.

The encounter

It happened again today. I ran into someone I hadn't seen in years. Exchanged pleasantries yada yada and then the question I dread "I heard you had gone through a health scare awhile back. I assume everything is OK now?" Hmmm... I could handle this with my usual " oh of course" and move on. For some reason today, that lie just didn't flow out of my mouth. I anwered "well, no not really. I am still on treatments. " Cut to aquantance with puzzled look. "actually, I have metastatic disease and will always be on treatment". Aquaintance:"So, your not back to work?" Me: "No, indicating my 2 little ones sitting a few feet away. With them and my tratments, my life is pretty busy."
I don't know if I am comfortable with the role of cancer educator. Why put myself through that when a simple "I'm fine now" would have ended the exchange? I don't know. But, for today, there is one more person in the world questioning what he thought he knew about cancer.

Me and my Boy

January 17th 2008

Well, I survived the Holidays. How do we get through it? Every year I think I'll never get it all done and somehow it works out. I have found that I need to scale back a bit because of my energy levels. I think I put out about half of all the decorations we have. Honestly, the kids didn't notice so it really does make sense to cut back where you can to save energy for the important stuff.
Been feeling an odd ache in my back so of course the mind games begin. Aleve seems to take care of it so it can't be that bad right?
We are going to Disney in 2 weeks so I'm starting to focus on that and hope no one gets sick or no major snow storms hit.
I'm torn as to whether I should use the "cancer card" to get access to the areas on the rides where you can sit instead of stand in line. I'm also considering renting a scooter just to save energy. DH feels that "wouldn't be right". I feel that way sometimes and then think "Hey! I have Cancer. Hello! Who else deserves to ride around on a freakin scooter more than me!"
In the end, I'll probably walk like everyone else. I have this fear that if I make too many concessions for my cancer, it will give it life.
New PET/CT scans are due at the end of Feb. so ,of course, nothing can change until after our Disney trip. I don't care if I'm coughing up blood and dragging myself on the floor. I'm getting on that plane to see the Mouse!

Oct. 22 2007

I went to the Metastatic Breast Cancer Network Conference in Nyc on the 13 th of Oct. I was asked to be a speaker in a break-out group for newly diagnosed patients. It was a very emotional experience. I hope I helped some of the women there. The emotion, stress and fear on their faces was so evident. It ran right through me. I'll share some of what I talked about with them at another time.
I met some wonderful people. One of them was Patty from Florida and her husband. She wrote to me shortly after and I will post below what I posted back to her. It will explain a little more of my personal history.

Hi Patty!
It was great to hear from you. I really enjoyed meeting you and your husband. I wish it was under happier circumstances, of course.I told my husband all about you guys. I wish he had come. Maybe we could have gone out to dinner or something. I know he’d make you laugh that’s for sure. We have a slightly sick sense of humor when it comes to this cancer crap.

Did you get to the support group? Was it one for mets or a regular one? Any help? We have a great social/support group here out of Hartford Hospital. They get together informally every month. Lately, I’ve been feeling less and less connected to the group. Last month one woman had it at her house to celebrate her 5 years of being cancer free. I skipped that one. I know another woman in my town who just turned 30. She was also diagnosed at stage 4 from the beginning a year ago. She has bone and liver mets, but is now NED. She seems really to just want nothing to do with the cancer world. I keep inviting her to lectures etc and she always says “no”. I can understand that after a year of living this, she just wants to detach. Everyone has different ways of dealing.

My story is that I had a lump when I was nursing my son. I just wrote it off as a blocked milk gland or something. My OB-Gyn even admitted that they didn;t like to do mammograms on nursing woman since their breast changed all the time. He said to wait until I was done nursing for 6 months and gave me the mammogram slip. After I stopped nursing and things shrunk back to normal size the lump was much more obvious and it was my husband who mentioned that it didn’t seem right and maybe I should get the mammogram sooner. It is always one of those things I will regret. Waiting so long to get it checked out.
I was so clueless going in that day thinking they would just reassure me it was a remnant from nursing. Man, how could I have been so wrong. The wheels started turning so fast. I remember sitting in my car after I got out of there with my films in my hands to bring to the surgeon the next day. It took several minutes to get my hands to stop shaking to call my husband.

Things just went down hill after that. They were immediately suspicious about metastisis since the lump was so big. They wanted to put me though staging tests right away and start chemo first. That was the most aggressive thing they could offer, but since I was highly er+, I could also have chosen tamoxifen only. That didn’t seem like enough so I chose chemo. I went to Dana Farber for a second opinion and they said I could do either and would probably do “very well” no matter what I chose. Very helpful.
I did 8 rounds of chemo which we actually know did little to nothing for my cancer except maybe keep it stable. When chemo was over I started lupron shots to shut down the ovaries and had a lumpectomy and a mastectomy then tamoxifen. Reconstruction was not offered to me since we didn’t know if I’d also need radiation. Turns out I didn’t need radiation, but I’m not looking for anymore surgeries now so I go with my prosthesis. I had my ovaries out a year ago so no more lupron shots and now I can be on femara. I also get zometa infusions every 3 month. I get PET/CT scans every 6 month and all have so far been stable more or less.
I thought I could never be happy with anything but cancer free, but stable is OK. I’ll take it.

I always felt from the beginning that there was something I was meant to do. I just didn’t know what it was. I thought maybe I should write a book. I didn’t know, I just knew I had this strong feeling that I needed to do something. My therapist asked why being a mom and wife and fighting the disease wasn’t enough and I didn’t have an answer. That was important, but I still felt something was missing.
Finally several months ago I began volunteering some time for the MBCN and Y-me org. I’m training now to be an on-call peer counselor for y-me. MBCN asked me to be part of the break out groups. I don’t know if I’ve found exactly what I’m supposed to do yet, but I feel I’m going in the right direction.

Maybe we could go on the lecture tour together! I understand your feeling that you may someday be lecturing in front of groups. I’m sure you didn’t want cancer to be the topic.

Right now, I can’t go to Houston since I’d need help with the kids and my family will be away. I’d love to go. The lectures look great.

Let me know how you are holding up and if you have time, let me know your diagnosis, treatment etc.
It’s tough to keep up the positive attitude for sure. But, when it really comes down to it, the alternative isn’t so pretty.

Sorry this is so long!!!
Thanks for writing.

Suzanne